Ian Cusack was five years old when he was struck by a car outside his home in Limerick in 2008. He suffered devastating head injuries which left him needing 24-hour care. After four years of suffering, little Ian died tragically from the injuries sustained in the collision.

Little Ian

His mother Oorla Cusack described it as “every parent’s worst nightmare.”

Speaking to Independent.ie, she said: “He was a perfect five-year-old boy with his entire life ahead of him. He could have been anything. It’s every parent’s worst nightmare. It could happen to anyone.”

Ms Cusack explained that she found no support for children with acquired brain injury. This led her and her family to start a campaign through their charity Ian’s Trust, for greater recognition of the trauma suffered by families of children who require constant care.

Ian’s Trust has so far raised around €40,000 for children and families with brain injuries.

(L to R) Oorla, Ian and sister Sophie

Ian was outside his home in Clarina, near Limerick City, when he was struck by a learner driver on September 25th 2008.

“I was taking him to Irish Dancing and he loved Ribena so I had poured him a bottle of that. He told me he wasn’t allowed that drink at the class so I went back to change it to water and unknown to me he wandered over to the side of the road and was knocked down by a L driver.

“He was taken to the Regional Hospital in Limerick and within an hour, he was rushed to Cork. Things just went out of control from there. In the end they had to try and remove some of the brain tissue to take down the swelling.

“To be honest, they were an awful four years for him. In some ways it would have been better off if he had of gone that day. He was in so much pain. He cried solid for four and a half months.”

Ian and his brother Jack

Oorla, who was a nurse in Temple Street for ten years, said she wasn't satisfied with the services available in Ireland.

“There are services available but you have to fight for everything," she added. "Ireland is way behind other countries. Like everything here, you are put on a waiting list and children’s needs are changing all the time. By the time we actually got the equipment, it may not even have been needed.

“We had to travel across the country to different hospitals all the time and we had nothing to put him in. He would scream all the time from Limerick to Dublin. My husband, John, would drive with earplugs in. In some ways the services are barbaric.”

The Cusacks decided to set up a charity in Ian's memory to help other families experiencing similar situations.

Ian and his brother Jack

“We set up Ian’s Trust about a year and a half ago and became a national charity two months ago," she said.

“There is a charity for children over 16 years old but there is very little available for children aged between six and 16. If a child has cancer, there is so much support out there and we are just trying to help families by letting them know there is support there and by helping them with their daily expenses," Oorla said.

“We’re a local charity providing help for a national problem by giving families lifelines. We give around €3000 to each family. It’s not a lot but it means so much to them.”

Ian’s trust have a big event coming up - the To the Moon and Back Cycle, Run and Walk which takes place on August 16th, the day before the anniversary of his death (August 17th 2012).

There is a 60km cycle and a 10km run and walk starting from the bandstand in Kilkee in Co. Clare.

Oorla is also running the New York Marathon on Ian’s birthday in his memory.

“On his birthday we’ll run through the streets of New York remembering him and on the 16th we’ll remember him in Kilkee.”

For further information about Ian’s Trust and their upcoming events, see www.ianstrust.com.